"Having to look over your shoulder or wonder what will happen next is something that makes people fearful, but information is power," said Evans.

The gene mutation called BRCA-1 and BRCA-2 is not common.

But genetic counselor Sarah Hall says the risk of getting breast cancer for those who carry the mutated gene rises to 65% or more.

"It's a highly penetrant cancer syndrome. If you have a mutation in one of these genes, your risk for getting one of these cancers is really high, unless you're doing preventative therapies, and that includes surgery," said Hall.

May opted for exactly that.

"You trust the research, you trust the medical professionals. I would reach out to people who'd been through it. And eventually I started to learn that it was going to be okay," said May.

In August last year she had an oophorectomy to remover her ovaries, a hysterectomy to remover her uterus. In October she had a double mastectomy.

"This huge burden has been lifted off of me. I'm not wondering every day - is this the mammogram they're going to find something? Is this the one that will end my life?" said May.

Dr. Evans says May's attitude is key to living without fear.

"I go back to the whole -- knowlege is power -- thing and being aware of what your reality is.

May took charge of her reality, and knows she made the right decision for her.

"In the end I never heard from a woman [who had the surgery] that said it wasn't worth it, and that they wish they hadn't," smiles May.

The risk factor for those who carry BRCA-1 or BRCA-2 decreases to about five percent after surgery.

Insurers cover mastectomy surgeries for women who have BRCA mutations or relatives with early-onset breast cancer. A federal law from 1998 also requires insurers to cover reconstructive surgery after mastectomy.